Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Needing support and opinions from those who know.


  • Please log in to reply
28 replies to this topic

#1 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 13 December 2012 - 10:42 AM

Hello everyone I am new to this forum, in fact I still can't grasp that I am posting this at all. I am the type of person who dismisses things as no big deal because I don't like to worry people. A few years back i began to notice a slight occasional tremor in my left hand, mostly my thumb. Since then It has gotten worse, and now is in both hands. I notice it less if I am busy doing things, but when I am sitting still they shake almost constantly, somedays more then others. It has now gotten to the point where I feel as if both arms arm shaking like inside my arms. I have a slight headache most days, My left shoulder somedays is so stiff or sore that it affects some of my daily functions. Also for the last year or so have had a constant stiffness in my left hip it is painful and difficult to walk after gettting up from sitting and sometimes just in walking in general. My neck and shoulders always feel tight.....I usually just write that off to stress. In the last few months the little voice in my head tells me something is wrong, especially since I have noticed occasional involuntary twitch of my head or shoulders. I just had an appt with a neurologist and an MRI yesterday. I am 34 and there is a strong history of PD in my family. The Dr. seemed to not want to discuss the possibility of a PD diagnosis but the more I read and research and talk to family members the more my instincts tell me it is more likely PD. I guess I am just wanting some input from people who have been through the process. I also have had depression and anxiety issues that have seemed barely affected by a drug cocktail prescribed by my doctor/psych. I would like to know what you all think having read this....


Susie

#2 Kristakj78

Kristakj78

    Advanced Member

  • Members
  • PipPipPip
  • 150 posts
  • LocationAllentown, PA

Posted 13 December 2012 - 01:19 PM

Hey Susie, I wouldn't worry just yet, (I know easier said then done). At least you've taken the first steps to figure things out. I am 34 too, and was recently diagnosed after a schlu of different tests. The neurologist told me based on my DAT Scan images, that it looks like I've been living with PD for years now (there are sooooo many symptoms that I blew off to stress, etc., and so did my primary a few years ago). It's interesting that you have a family history of PD. I don't, (from what I've been told), and my neuro even had my father assessed due to his tremor and walk, and nothing there. I finally got a solid diagnosis, esp with my response to the meds. My neuro's next thing for me is genetic counseling, and genetic bloodwork to see if I have the gene, esp for my kids' sake. She said not all Dr.'s do this, but considering my DAT Scan results and my age, we are gonna move forward and get it done. Considering you already know you have a family history of it...maybe you can ask your neuro what he/she thinks about this genetic test. Feel free to message me any time! Good Luck!

Kristin

#3 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 13 December 2012 - 01:45 PM

Thank you Kristen! It all seems so overwhelming right now and uncertain. It wasn't until I started reading through these forums and seeing large parts of what i am feeling in others posts that I started to accept this possibility. My follow up isnt until Tuesday and that feels like forever away. I keep telling myself I am over reacting that these symptoms will just go away....although deep down I think I know the truth. So as someone my own age in your opinion with what I have described am I over reacting or should I just start to see this as a real possibility?

#4 Daven

Daven

    Advanced Member

  • Members
  • PipPipPip
  • 328 posts
  • LocationNorthern Virginia

Posted 13 December 2012 - 02:05 PM

Susie,

Might I suggest you wait until Tuesday before you accept a particular fate. I'm very early in my journey, have yet to be diagnosed 100% that I have PD but was told that I mostly likely have it. I've started taking my first prescription just the other day in hopes of alleviating my symptoms. Part of me hopes it doesn't work so I can say I don't have PD. For now, I'm holding on to the possibility that my symptoms are benign or caused by something much less ominous.

I hope your symptoms are something else.

Dave

#5 Kristakj78

Kristakj78

    Advanced Member

  • Members
  • PipPipPip
  • 150 posts
  • LocationAllentown, PA

Posted 13 December 2012 - 02:10 PM

I'm no doctor, so I can't say...all you can do is hope your journey in discovering what's going on with you turns out ok, and if it is PD, we're all here for you :)

We all have different stories and symptoms, and individualized issues...too much to say.

As for me, and my own PERSONAL story, I wish I was aware of this disease earlier, since I "ignored" soooo many of the symptoms for years. You are in the right direction going to a neuro and ruling things out. That was my 1st step too. There are soooo many things that can have similar PD symptoms, and only a neuro, or an MDS (a neuro that specializes in movement disorders), can tell you what's what. Good luck!

#6 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 13 December 2012 - 02:38 PM

Thank you all for the support.....it helps to be able to talk about things and to know that you all know the scary place I am in. Fear of the unknown is worse then anything. I will keep you updated.

#7 dballinger

dballinger

    Newbie

  • Members
  • Pip
  • 1 posts
  • LocationIndiana

Posted 13 December 2012 - 04:46 PM

Susie: I am 53 and was diagnosed with PD a little over a year ago. The best thoughts I can give are a couple of things my doctor told me. Don't read to much on the internet about what could happen because everyones path is different. Stress and worry makes my symtoms worse and he was right because it was just stressing me out. I take one day at a time and try real hard not to let it keep me from doing anything. I still bicycle, hike, fish, golf, scuba dive, work in the yard, and squeeze in time for a full time job. Second, he told me he has had patients that went 20+ years without their symtoms getting worse. I am hanging onto that and so far, I don't think mine have progressed (tremors in left arm and leg). Good Luck and God Bless

#8 Island Woman

Island Woman

    Advanced Member

  • Members
  • PipPipPip
  • 292 posts
  • LocationNewport RI

Posted 13 December 2012 - 05:17 PM

Susie, as dballinger said plus others....stress and worry makes things worse....some times friends call me the queen of stress...hard to get a handle on it ...remember you're not alone...if posting helps...do it...always someone here.

Patricia

#9 paulg

paulg

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 13 December 2012 - 06:20 PM

Susie: Having Parkinson;s is not a show stopper. Exercise your head off and eat healthy food - you will feel better physically and emotionally. And every once in a while go to Youtube and listen to Bo Diddley songs! I do and it helps keep the depression at bay...

Have Fun!

PaulG

#10 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 533 posts

Posted 13 December 2012 - 11:33 PM

Wow, Everyone, let's just hold our horses for a second !or at least until susie's doctor commits to a final diagnosis.

Good luck Susie. Only your doctor can sort this out for you. Keep us posted.

PS : I've noticed that most first time posters who ask for initial advice don't return for an update and that's too bad for our community. we need this feedback, not only from patients who end up with a diagnosis of PD, but also from patients with an alternative clinical diagnosis. it's important for people to know that not everyone with Parkinson's-like symptoms has PD.
English is not my first language !

#11 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 14 December 2012 - 08:54 AM

I am very grateful to everyone who has taken time to not only read my post but to reply back. I know there is a range of diagnosis that could come back.......Joining this forum and posting has given me the courage to get real with myself, and with my husband. I have known in my gut for a while that there is something not right(whatever the something is) but I have worked overtime to hide the tremors, and to not admit or even allow myself to acknowledge any of the other things. I realize there are things I did not tell the neurologist when I went, and now see that was a silly mistake. Sometimes I am my own worst enemy......thank you all so much for the support and well wishes. I am doing my best to stay positive until the final answers are in. It is very comforting to know this forum is here and that there are people like all of you to help make this a little less scary.

#12 Elizabeth K.

Elizabeth K.

    Member

  • Members
  • PipPip
  • 22 posts

Posted 14 December 2012 - 04:43 PM

Please keep us posted and know that we are here for you.

#13 gmk

gmk

    Advanced Member

  • Members2
  • PipPipPip
  • 186 posts

Posted 15 December 2012 - 02:49 AM

Thank you for your presentation. We are waiting for your results and in meanwhile tell us more about yourself and signiticant others in your life.
gmk

#14 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 15 December 2012 - 11:48 AM

More about me...well I am 34 I have lived in WA state my whole life. I am married to a wonderful and supportive man, his name is Howie. I have a son who is 12 a stepdaughter who is 14 and a step son who is 10. Only our our daughter lives with us. My son is in Utah with his Dad. This has been a very trying year or so for me, I lost my Mom in July of 2011 and life just seems to keep putting more and more on my plate. I have realized I am much stronger then I ever realized which is helping to face this new challenge what ever it turns out to be. I am very glad to be extending my support circle with all of you. I will be sure to let you all know how what I find out on Tuesday!

#15 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,380 posts
  • LocationSeattle, WA

Posted 15 December 2012 - 05:17 PM

Hello, Sullysgirl,

What part of WA are you in? I'm in the N Seattle area.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#16 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 15 December 2012 - 10:33 PM

I am in Marysville....just moved up here about a year and a half ago.

#17 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,380 posts
  • LocationSeattle, WA

Posted 16 December 2012 - 12:09 AM

Would love to meet with you sometime. As soon as I am out of this rehab!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#18 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 16 December 2012 - 11:05 AM

That would be wonderful!

#19 Kristakj78

Kristakj78

    Advanced Member

  • Members
  • PipPipPip
  • 150 posts
  • LocationAllentown, PA

Posted 17 December 2012 - 07:46 PM

Susie, just wanted to say good luck tomorrow...that's when you're finding out your results, right? ...at least of the MRI? I wish we were closer. We seem to have so much in commom, figures we're on opposite sides of the country! I too have a 13 yr old son, and two younger ones as well. It is important to have support. Count your blessings. That's great thay you have such a supportive husband and family. I'm borderline divorce with my husband....the PD and his own disability truely CLASH, to understate things :( and I have NO family at all in my state.

Whatever happens with your testing, GOOD LUCK, and know that this is a great forum regardless; very supportive :)

#20 Sullysgirl

Sullysgirl

    Newbie

  • Members
  • Pip
  • 9 posts
  • Locationwashington state

Posted 17 December 2012 - 10:44 PM

Thank you so much! I agree it would be nice to be closer. Washington is a beautiful state....you could always relocate :) just kidding. Yes tomorrow is my follow up....I will be sure to update here as to what I find out.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users